Bioethics in Action, Part I: Helping Students Explore Difficult Questions in Health Care

Image

A man with the words “do not resuscitate” tattooed on his chest (shown here with the accompanying signature obscured) died in 2017 at a hospital in Miami. The tattoo ultimately “produced more confusion than clarity,” doctors said. Related ArticleCreditThe New England Journal of Medicine

In this first part of a two-part series, we use resources in The Times to help students explore difficult ethical questions related to patient autonomy, physician autonomy and scarce resources, such as:

• Should fertility clinics be required to offer services to gay or lesbian couples? • Should parents have the right to refuse lifesaving medical care for their children because of religious beliefs? • Should limits be placed on the amount of money the government spends on any one patient’s health care?

To help students address these questions, we first introduce them to guiding principles in bioethics. Then, in the suggested activities that follow, we ask students to take on the role of bioethicist, and apply these principles as they consider one or more of the topics below.

Teachers can also invite students to use the final activity to read The Times on their own to see how overarching questions about bioethics are often a part of our everyday lives.

_________

Guiding Principles of Bioethics

Professional bioethicists come from a wide variety of backgrounds. Many of the field’s founders were academic philosophers or physicians, but practitioners include nurses, social workers, clergy, lawyers and research scientists. The actual work of bioethicists transcends both the public and the clinical spheres, as described in the video above.

The public role of bioethicists involves writing and teaching about the most challenging controversies in their fields, often grappling with the impact of new technologies such as xenotransplantation or three-parent babies. In hospital settings, bioethicists consult with health care providers, patients and families to help them address the ethical issues that arise during the delivery of medical care.

In the United States, four principles generally guide the decisions of bioethics:

• Respect for autonomy, the right of patients to make their own decisions and determine the health care they wish to receive without coercion

• Nonmaleficence, the rule that physicians should “do no harm”

• Beneficence, the obligation of health care providers to affirmatively help patients

• Justice, the goal of treating all patients fairly and ensuring equitable access to medical services.

These principles were first formally introduced by Dr. James Childress and Dr. Thomas Beauchamp in the 1970s. Since that time, many bioethicists have also incorporated a fifth principle, utility, that strives to achieve the best outcome for the greatest number of people.

As explained in this article by Eugene Russo, there is no single direct path to becoming a bioethicist. Students interested in bioethics careers can pursue degrees in medicine, nursing, philosophy, theology, social work or other related fields and then focus on bioethics. The job does not require a license, only curiosity, compassion and expertise.

In a well-known essay called “Doctor Talk to Me,” the author and New York Times editor Anatole Broyard wrote about the particular qualities he sought in a physician to treat his prostate cancer — including “style” and “charisma” in attire, “a tragic sense of life” and “a furious desire to oppose himself to fate.”

One of the guiding principles of contemporary bioethics is autonomy, the belief that patients should have broad latitude in making their own medical decisions. But when it comes to selecting a physician, hospitals and society must often establish guidelines on the degree to which patients have choice. The same is true of matters like assigning hospital rooms or home health aides.

Activity: Identifying Limits to a Patient’s Right to Choose a Health Care Provider

Have students first list the qualities they would personally look for in a physician — as well as the qualities they would avoid.

Then, have them read Mr. Broyard’s essay and discuss which of the following requests should be honored:

1. A 17-year-old immigrant from Southeast Asia asks for a female obstetrician to deliver her baby.

2. An Orthodox Jewish Holocaust survivor says she would prefer that a home care agency assign her a Jewish home health aide.

3. A patient’s daughter asks that her father, who suffers from mild dementia, be assigned a Caucasian home health aide because having a nonwhite person in his home will “confuse and frighten” him.

4. An African-American criminal defendant asks the court to appoint a black forensic psychiatrist to evaluate him because “a white doctor can’t understand what I’ve been through.”

5. A male urology patient insists upon a male surgeon because he does not feel comfortable with women touching his genitals.

6. A male urology patient insists upon a male surgeon because he tells the hospital staff, “Everyone knows that men, on average, cut straighter.”

7. A wealthy patient insists that a senior surgeon perform his emergency appendectomy and that no medical students or junior doctors be allowed inside the operating room.

8. A white supremacist arrives at the emergency room with a life-threatening bullet wound in his abdomen and states he would rather die than be operated upon by a nonwhite or non-Christian surgeon because his “reputation” is at stake.

9. An elderly female patient objects to sharing a hospital room with a transgender patient who identifies as female and requests a room change.

10. A female sexual assault survivor requests that no unaccompanied men — including nurses, patient care associates, and even housekeepers — be allowed into her hospital room.

Students may also wish to consider how rules affect wealthy and indigent patients differently outside the emergency setting. A rich patient who wants a doctor of a particular background or ethnicity may be able to choose a private practitioner; a less-wealthy patient receiving care in a public clinic may have fewer options.

_________

Choosing Patients

As much as patients value choosing their own doctors, sometimes health care providers also have preferences about which patients they wish to treat. Multiple studies have shown that doctors’ care can be shaped by prejudices, both intentional and unwitting.

One of the most controversial legal and ethical questions in this area is whether fertility clinics must offer services to gay or lesbian couples. Beth Littrell of Lambda Legal wrote in The Times’s Room for Debate blog abouttwo such prominent cases, including a California clinic that refused to provide Guadalupe Benitez with infertility treatments because she was a lesbian and the operators of the clinic were fundamentalist Christians. The case was eventually decided by the California Supreme Court.

Ask students working in small groups to rank the arguments listed below, both in favor and against allowing the operators of the clinic to refuse service to Ms. Benitez, from most persuasive to least persuasive in each category. They can also add any additional arguments they think of. Then, have students discuss some of their reasons with the whole class.

In favor:

1. If the operators are forced to perform services they believe to be immoral, nobody who shares their religious values will be able to practice reproductive medicine.

2. Providing fertility treatment is not like selling flowers or operating a lunch counter, where the personal relationships of the parties are secondary. Rather, it is an intimate relationship that requires trust and common values.

3. If courts can force the clinic to offer fertility treatments to lesbians, they might also compel other providers to offer services to which they object, such as mandating that geriatricians provide assisted suicide or that obstetricians perform abortions. Many religious people would be driven out of practicing medicine entirely.

4. If some fundamentalist-Christian-owned fertility clinics close, this will reduce the overall supply of services and create longer waits at other clinics. Ms. Benitez may end up with less opportunity for treatment rather than more.

Opposed:

1. Allowing discrimination in health services is demeaning to lesbian couples and brands them unfairly as second class citizens.

2. Permitting such discrimination places an unfair burden upon lesbian couples, who must investigate whether they will be welcomed at each potential clinic and, in doing so, expose themselves to mistreatment or humiliation.

3. Doctors are licensed by the government and their number is artificially limited (like taxi medallions and sometimes liquor licenses). Therefore, they hold a public trust and should be forced to serve the public welfare in ways other private businesses are not.

4. In many geographic areas, no other clinics will be available and lesbian couples will have to travel significant distances at considerable extra expense for services. While some fundamentalist-Christian-operated clinics may shut down, others may accommodate to a new law or policy requiring them to offer care to all, increasing the services available to women like Ms. Benitez.

_________

The Right to (Refuse) Care

Image

Barbara Barg, a Chicago poet, collapsed at a bus stop this spring and had trouble leaving the E.R. to see her regular doctor across the street. Related Article.CreditWhitten Sabbatini for The New York Times

Another controversial issue arises when patients wish to refuse care or to leave the hospital against the advice of their physicians. Often the courts are asked to get involved to determine when, and under what circumstances, a patient or her family may refuse care.

Activity: Evaluating Court Decisions About a Patient’s Right to Refuse Care

Have students choose one of the following cases — or another related case they find on their own — to research further. They should determine whether they agree with the court’s decision about refusing the right to medical care, and explain why.

Case #1: From the 1960s to the 1990s, one of the most widely-debated issues in bioethics was when, and under what circumstances, a patient had a right to refuse medical care. A series of Supreme Court cases has established as a general rule that competent adult patients may turn down unwanted medical care. That same right is not afforded to parents when making decisions for their children.

Jehovah’s Witnesses, for instance, are allowed to reject lifesaving blood transfusions for themselves, and many do so, but they may not refuse necessary transfusions for their minor offspring. This principle is strongly associated with Supreme Court Justice Wiley Rutlegde, who wrote: “Parents may be free to become martyrs themselves. But it does not follow they are free, in identical circumstances, to make martyrs of their children before they have reached the age of full and legal discretion when they can make that choice for themselves.”

Case #2: A related question was whether the families of patients on life support had the right to remove feeding tubes or ventilators if their relatives had little chance of recovery. The most famous of these cases was that of Karen Ann Quinlan (1954-1985), a comatose young woman from New Jersey whose family sought to remove her respirator so she might die with “with grace and dignity.” The New Jersey Supreme Court ruled in the family’s favor and the respirator was removed, but Quinlan lived another 10 years without regaining consciousness.

Case #3: In a second high-profile case, that of Nancy Cruzan (1957-1990) of Missouri, the United States Supreme Court ruled that a family had a right to withdraw life support only if “clear and convincing” evidence existed that this was what the patient would have wanted.

Case #4: During the early years of the 21st century, the question of the right to withdraw care became highly politicized, with national figures including President George W. Bush weighing in on the case of Terri Schiavo (1963-2005).

_________

Living Wills

Living wills allow people to specify in advance what care they would or would not wish to receive if they lose the ability to make their own medical decisions. A person may also appoint a health care proxy: a relative or friend who will make decisions for him or her when he or she is no longer able.

Activity: Making a Living Will

Have students design their own living wills. They may wish to consider the following questions in drafting their documents:

• How low a quality of life is acceptable to you?

• Would you wish to remain on life support (e.g., a ventilator) if you had no chance of ever regaining consciousness? A 1 percent chance? A 10 percent chance?

• Would you wish to receive active treatment to keep you alive if you had advanced dementia? If you were no longer able to communicate with your loved ones?

• Would you wish to be kept alive through artificial means if you were going to be paralyzed from the neck down? If you were going to have to live permanently in a nursing home?

• Which person would you want to make health care decisions for you?

In addition, you can ask students: What should qualify as a living will or advance health care directive? Must it always be a signed or notarized official form, or should patients have other ways of communicating to doctors their medical wishes? For example, a man, 70, in Miami was admitted to a hospital, unconscious and without any identification, but he had the words “do not resuscitate” tattooed on his chest. How far should doctors go to try to save this man’s life?

Costs of Treatment vs. Worth of a Life?

Our society has witnessed a number of high-profile cases in which patients and families demanded more care while hospitals and insurers argued that some forms of care are too expensive to provide.

One such case involved Bruce Hardy, a British man with kidney cancer. Although a drug, Sutent, was available that might have extended his life for an additional six months, the cost of treatment was $54,000, and the British National Health Service refused to pay because such treatment was not considered cost effective. According to a British government agency, an extra six months of life at the time was worth about $22,750.

Money spent on extreme cases may mean less funding available for preventive medicine like flu shots, routine screenings such as mammograms, or research into cures for diseases like cancer and A.L.S. Some scholars have argued in favor of rationing health care to make certain limited resources are spent wisely.

Health care in the United States costs more than in almost any other country in the developed world, but quality is questioned. Related Article.CreditJohn Moore/Getty Images

Activity: Deciding How Limited Health Care Dollars Should Be Spent

Have students read about the Bruce Hardy case and then discuss or write about the following questions:

1. Should limits be placed on the amount of money the government spends on any one patient’s health care? If so, how much is too much? If not, why not?

2. How much is six additional months of life worth? Why did you answer the way you did?

3. Are there some procedures or medications that are simply too expensive for government insurance (Medicare and Medicaid) to pay for? If so, in order to maintain health care equality, should we also forbid wealthy people from purchasing these treatments privately?

4. Health care funds can generally be distributed among three large categories of services: public health and preventive measures that reduce the risk of future disease (like antismoking campaigns), acute and chronic medical care, and research to develop future treatments and cures. How should the United States allocate its resources among these three groups?

5. Oregon’s health insurance system does not cover certain medical procedures such as chemotherapy for cancer patients who have less than a 5 percent chance of living five years — even though some of these patients might live a few more years with chemotherapy. Instead, the money is spent on treatments deemed more cost effective including preventive medicine. Is this a fair system? Explain.

6. The United States spent 17.8 percent of its gross domestic product on health care in 2015. Is this too much? Too little? Should we spend more on health care to increase medical services or insurance coverage, even if this means less money to spend on other areas such as consumer goods? Why or why not?

_________

Going Further: Exploring Questions About Bioethics With Any Day’s Times

Image

The results of a New York Times search on the term “bioethics” over the past 12 months.

The topics in this lesson asked students to ponder some broad, overarching questions at the nexus of medicine, law, public policy and philosophy — questions that Times articles touch on regularly in all kinds of contexts.

Invite students to read, or search, The Times for more news and Opinion pieces that relate to any or all of the questions below.

• How do the ethical obligations of doctors differ from those of non-doctors?

• How should the preferences of individual patients be balanced against larger societal goals, like the prevention of discrimination and the equal distribution of resources?

• In helping patients and families, to what degree should bioethicists draw upon their own values and personal experiences?

• Should ethical principles in medicine remain consistent with time, or must they evolve to meet technological advances and changes in society?

How would they answer these questions? How do the articles or Opinion pieces they found inform or complicate those answers? Why are the answers important to our society?

_________

Jacob M. Appel is a psychiatrist and bioethicist who has taught bioethics to both high school students and undergraduates.